my story revisited #106-hope it was available for her family

MY STORY REVISITED #106-HOPE IT WAS AVAILABLE FOR HER FAMILY

mary anne roser is a journalist who wrote an article linked here about me
later she wrote the article mentioned below in the blog i wrote 8 years ago
the links in the article below are old and are not now available 
however here is the updated article link on the story she wrote in 2013 about the young lady being the caregiver for her middle age sisters with early onset alzheimers

when she wrote this article my younger brother had died a few weeks earlier and it was about 2 years after she wrote this article about me that was picked up by many local papers across the us

i have wondered at times how this young lady faired
her family has the early onset alzheimers gene 
its the one that if you get the gene you will get early onset alzheimers disease

my guess is that her sisters have died with alzheimers by now
she  was lucky and didnt get the gene
the symptoms start in their 30s and 40s and they die in their 40s and early 50s

compare that to the later onset alzheimers gene called the apoe 4 gene where if you get it you might not get alzheimers disease but you are at an increased risk for developing it
you can alter that risk by maintaining a long term healthy life style
thats the one i have
thats the one my younger brother probably had as well as my mother both who died with alzheimers
he at 62 her in her mid 80s

there have been monoclonal antibody treatments using antiamyloid antibodies in early onset alzheimers but so far it hasnt seemed to help
there are newer antibody treatment studies in these folks that are ongoing now

i hope her family members will qualify for them

if she had gotten the gene then she would be doomed to follow her sisters course
 she didnt get the gene she so is able to move on with her life

im hoping i got a reprieve by being on the aduhelm (aducanumab) infusions which may slow down the disease
i feel lucky to be one of only a few folks in the us and the world to be on this drug
i get infusion #5 in the restarted biogen aduhelm treatment study next week
i am at the point where i am at risk for developing aria or microbleeds in the brain
after each increase in dose i have an mri to make sure im ok
this infusion is the start of the 6 mgm dose so i will get a mri next month and again in january
i had one last week following my 2nd 3 mgm dose 
so far so good

if i develop aria i will be paused in the study until it clears
i had 7 doses in the prepandemic study and had no issues
i ended up on the 10 mgm dose without any issues

its hope is what it gives
she and her sisters had no hope

ill take hope anytime

__________

08-30-2013

ARTICLE

mary ann roser wrote an excellent article last sunday in 
the austin american statesman on alzheimers disease that has
struck a family when they are young

there is a video in the article that you can watch
but the written article requires digital access
(that sucks since the article is such a good one)

she is the one who wrote the article about me 2 years ago
that was published in the same paper
if you look at the top of this blog you will see newspaper article
on my story
click on it to read the article

in her latest article she tells the sad story about this family who
some of them
have inherited one of the dominate genes such that if you get the
gene you get the disease that dreadful alzheimers disease

in their case they get it so young
and they die from it so young
she has two sisters with the disease now

in the article the person who is in her late 30s who now has
the disease has to have her sister as her caretaker
then
one of the sisters with the disease has a 20 year old daughter
who may or may not have the disease
she hasnt been tested
at this point why do it

if she has the gene then the disease is actually starting up
in her now and she will be where her mom is in 15 years

when my younger brother was diagnosed everyone said
he is so young
and he was so young
he died recently with it
so young

this young lady this 20 year old if it was 2023 might be
able to get on medicine or injections so that 15 years later
she would not have the disease

we are headed to that point but we are at the early part of
that journey so help is not available yet

my brother missed that journey and i may be too late to
jump on for a ride when it gets here

hopefully it will be there for her

in colombia there are families with this dominant gene for
alzheimers
several members with the gene will be started on one of
the alzheimers vaccines and will followed for 5 years to see
if it slows or stops the disease
several studies using these vaccines are being done here in the us
i  am hoping to qualify for one of those studies

please support us in the fight
donate and or join a walk to end alzheimers in your area
at www.alz.org/walk
__________
we are closer to finding more treatments and hopefully a cure for alzheimers disease

i have set up my team for the walk to end alzheimers in santa barbara named
organicgreendoctor at this link

please feel free to donate to our team to help raise funds to fight this awful disease

 

the organicgreen doctor